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Where Is All the Autism Funding?June 1, 2016
SOUTHBOROUGH, Mass.—Holly is 4 years old. Holly is a foster child, a ward of the state of Massachusetts. Holly is autistic.
When the government placed her at the New England Center for Children a few months ago, Holly spoke no words and had no other way to communicate. A pretty girl with long limbs and cornrows, Holly’s dimpled smile warmed her chocolate-brown eyes and melted hearts—until the frustration overwhelmed her. That’s when Holly punched and scratched and threw things.
“Our goal is to make enough progress with her so that she can be placed. So she can be adopted,” Bethany McCann told me. “So she can have a family.”
The NECC is Holly’s family for now, and McCann is director of admissions of the world-renowned autism institute that serves 270 children on campus and 3,500 students via its electronic curriculum purchased by public school in 18 states. There’s nothing else like it in the United States, a fact that nagged at me while I toured the NECC facilities outside Boston. (Disclosure: NECC co-sponsored an autism event with the Harvard Institute of Politics to promote my parenting memoir, Love That Boy).
McCann introduced me to Holly (not her real name) in a small classroom with three other children and four teachers—typical of the school’s teacher-student ratio. “Say hi, Holly,” McCann said.
Gripped tightly in Holly’s delicate hands was an IPad encased in pink soft rubber—one of the many measures the school takes to protect its equipment and students from tantrums.
“Say hi, Holly,” the teacher, a clean-shaven man in his mid-20s, softly echoed, while he slipped the iPad out of Holly’s hand. The girl pounded the table with tiny fists, but now understood what was expected.
“Hi,” Holly said. She looked at me then back at the teacher and poked his shoulder, the well-practiced way Holly tells people, Give me my iPad, please.
A brief moment, but one I’ll never forget. One in 68 American children are on the autism spectrum, according to the U.S. Centers for Disease Control and Prevention. Some, like my 18-year-old son Tyler, are on the high-functioning end of the spectrum. Others are like Holly, severely affected by the condition.
Few parents of autistic children can afford the NECC’s costs, which can exceed $300,000 per year. In Massachusetts, local and state taxes pay most of the tab. Corporate and private donations allow for renovations of the students’ residences and the purchase of adaptive technologies like Holly’s iPad.
Parents compete with each other to get their children admitted. They hire lawyers and sue their public schools under federal laws requiring accommodations for special needs students. A few are lucky enough to win, and government money linked to their children is steered out of public schools to the NECC.
“I called in every favor,” chuckled Lisel Macenka, the chairwoman of the NECC board. She was a corporate lawyer before her son was diagnosed with autism. She quit work to be Caleb’s advocate and fought to get him enrolled at the NECC, where she became deeply involved in the institution, first as a parent and later as a board member.
After six weeks at the school, Caleb started to respond to his name. He signed language. He looked his parents in the eye. “He was learning how to learn,” Macenka said.
The two of us were eating sandwiches in the office of L. Vincent Strully Jr., the NECC’s irrepressible chief executive officer who oversees 1,200 employees, a $90 million budget, and a campus in Abu Dhabi. Strully spoke in bursts of declarative sentences when I steered the conversation away from teaching theories to Holly—and what she represents for me: The lack of public support for autistic people.
“The system is fundamentally unfair,” he said.
“Parents with children on the spectrum are bounced from one bureaucracy to the next.”
“The system is rigged against parents with autism.”
Strully explained that, for decades, the federal government has required states to accommodate the special needs of people with autism and other disabilities, but Congress has never provided the money to do so. That leaves a gap that state and local governments must fill—or dodge, which is what usually happens.
“The parents of these kids are getting screwed,” Strully said.
Like me, Macenka is one of the lucky ones: She beat the system and her teenage son is getting good care. And yet she grieves for what she lost when Caleb was diagnosed with autism—every parent’s dream: the chance to raise a brilliant, popular, successful, and absolutely “normal” child, whatever that is.
“That dream is dead,” she told me.
I asked, “What do you see in Caleb’s future?”
“He’ll go to college,” she grinned. “He’ll get married to somebody who tells him to stop reading D.C. comics.”
He might not go to college, I said. He might not get married.
“You’re right.” Macenka winced. Then she smiled and said, “I’ll grieve then.”
I grieve now—for all the autistic people who are never diagnosed or treated; for all their parents who feel they’re fighting alone and losing; and for a nation so quick to marginalize the unique talents and immense grace that accompanies autism.
I grieve too for Holly, the brown-eyed girl who melted my heart, even as she heaved her pink padded iPad across the room. I hope she finds a home.